Even in a state like New York with massive healthcare systems, the vast majority of people I speak with do not have a clear (or sometimes any) understanding of what palliative care and hospice services actually do. This includes, to a lesser extent, healthcare workers themselves. And yes, this includes experienced physicians, too!
One of my biggest pet peeves at work is when I hear other physicians conflate and use the term “palliative care” when they specifically mean to say hospice. That is second only to people referring to opioid pain medications using the loaded term “narcotics,” but I digress...
A lot of people understandably tense up when they hear these terms because of the cultural association with imminent death. It is easy to imagine the worst whenever death enters the chat. We naturally fear what we don’t understand, but once you clear up the definitions, I think these terms themselves stop being scary.
Let’s do some demystifying.
What Is Palliative Care?
The etymology traces back to the Latin noun pallium (a cloak) and the verb palliare (to cloak or cover). The core idea is simple: to provide an extra layer of support, comfort, and protection to someone dealing with a serious illness.
Palliative care as a formal specialty was coined in 1974, roughly seven years after modern hospice was first established. It marked a necessary separation from pure end-of-life care because clinicians realized that patients living with chronic, non-terminal conditions also needed specialized support long before they were actively dying.
My own definition is that palliative care is a specialized medical service for people with serious, chronic, or life-threatening illnesses. It helps patients and their families better understand their diagnosis and prognosis, evaluate treatment options, plan ahead, and manage distressing physical, mental, or spiritual symptoms.
It is appropriate from the moment a serious diagnosis is made (such as heart failure, advanced COPD, chronic kidney disease, dementia, or cancer).
It’s important to note that palliative care can be provided alongside all other medical treatments, including aggressive therapies with curative intent. You do not have to give up on any active treatments to get palliative care involved.
In practice, the palliative team asks the detailed questions that other busy physicians simply don’t have time to explore:
What do I need to know about you to best take care of you?
What is your understanding of where you are right now with your illness?
Where do you want to be?
How can we potentially get you there while avoiding painful pitfalls?
If we can’t realistically get you there, what alternatives are there?
Doing this helps align medical treatment directly with what people actually want for themselves.
Because this is a lot to cover, palliative care is almost never done by one person in a vacuum. It takes an entire interdisciplinary team. My own team consists of physicians, nurse practitioners, a social worker, a medical assistant, and chaplaincy/spiritual care.
What Is Hospice Care?
Hospice was founded to counter modern medicine’s overemphasis on curing at all costs and return focus to compassionate care for the dying. Dame Cicely Saunders laid the groundwork in London starting in 1948 before formally opening the first modern hospice in 1967. The first US hospice opened in Connecticut in 1974.
Naturally, because hospice gave way to palliative care, hospice is itself considered a form of specialized palliative care.
In the United States, hospice is governed under specific federal Medicare rules.
To enroll, two main criteria must be met:
The Prognostic Rule: A person must have a terminal illness with an estimated life expectancy of 6 months or less if the disease runs its natural course. This must be certified by two physicians.
The Shift in Focus: The patient agrees to forego further curative or life-prolonging treatments for that illness, focusing entirely on comfort and quality of life. (Children are the biggest exception to this rule under federal law, allowing pediatric patients to receive hospice care alongside curative therapies.)
For the vast majority of people, hospice is NOT a facility you get sent to, despite popular belief that it is.
Instead, hospice is a way to bring medical care directly into the home instead of forcing fragile patients to travel to doctor appointments or emergency rooms. Visiting nurses, doctors, and aides work together to catch small problems before they snowball into big ones that require hospitalization.
Jimmy Carter is a great example of this in action. He enrolled in hospice in early 2023 at age 98. He ended up living in hospice for 22 months, reaching his 100th birthday surrounded by family. I often use him as a case study for what happens when a dedicated team successfully manages symptoms continuously to keep medical crises at bay while allowing the body to do what it naturally does otherwise.
Similarities and Misconceptions
Both specialties share the primary goal of reducing unnecessary hospital visits by providing additional support and spending the time to get to know you. This translates to more time spent at home with loved ones and better overall quality of life. In fact, clinical studies have repeatedly shown that patients with serious illnesses who receive timely palliative and hospice care often outlive those receiving standard (often aggressive) medical therapy alone.
Up until 2008, there was no formal subspecialty board certification in hospice and palliative medicine. Before that, training wasn’t standardized and the quality of care provided could vary widely across health systems. Today, the gap is closing as physicians complete accredited fellowship programs after their primary residencies in fields like internal medicine, family medicine, or emergency medicine. They then sit for the hospice and palliative medicine subspecialty board certification exam.
I will also say, some physicians classically viewed this field as a low-intensity specialty for a “soft retirement” or even an easy side gig. I personally have had other physicians ask me why my “talents are being wasted in palliative care.” I can only smile awkwardly and shake my head as I lack the energy to argue. My talents aren’t wasted, they are focused and deployed exactly where they’re needed.
In any case, I strongly disagree with anyone who carries that mindset, as most of our patients are medically complex and extremely fragile. One bad judgment call can cause severe harm and unnecessary suffering, and it takes immense mental and emotional energy to deliver truly excellent, personalized care.
The Bottom Line
All hospice care falls under the umbrella of palliative care, but not all palliative care is hospice care.
Palliative Care: For any stage of a serious illness, regardless of prognosis. Delivered alongside active or curative treatment. Billed as standard specialty care through regular insurance or Medicare Part B just as any specialist physician would.
Hospice Care: For the final chapter of a terminal illness. Focuses exclusively on comfort rather than cure when prognosis is 6 months or less. Covered 100% under the Medicare Hospice Benefit. This is the team that really helps make the magic happen when death draws near for when regular medical care has failed to provide further meaningful benefits.
The earlier people take advantage of what both services have to offer, the more control they retain over their own lives and healthcare choices.
Now over to you: Have you or a family member ever had to navigate palliative care or hospice? What misconceptions did you run into? Let’s discuss in the comments below.
If you found this breakdown helpful, consider sharing it or restacking it so more people understand these vital services.
I am a retired RN , and the experiences I have professionally are varied. (I will spare you the details here, and will share our experience during my mother's transition.)
The hospital I worked for finally established a palliative care department in the last few years before I retired, but you still heard very little about it. It definitely was never mentioned or offered during any of my mother's multiple hospitalizations, not that she would have taken to the suggestion well. To her it would just have been next door to "being put out to pasture," which is what she and her siblings all used to describe hospice. "They give up on you. They pull the plug." And by golly she was not in favor of that, ever, until her last hospitalization in 2017 during which she deteriorated significantly physically and mentally. (Hashimoto's encephalopathy was one of her diagnoses by a neurologist no one else in charge of her care agreed with, her cardiologist just said "it's her age and her poor vascular health and she needs to go to a nursing home." And that was in 2016. Thank you drug interactions.)
After she was moved to long term care in early 2018, she refused to eat. The staff kept asking what she liked, and they would offer her those things, but she still wouldn't eat, saying "I don't know why they are worried about my weight. I'm fine." They all thought it was dementia, I knew it was her life long tendency to start with. Dementia just took away her ability to acknowledge that she needed to eat more, even if she didn't have any appetite. She was adamant all along about "NO TUBES!" I asked the home's social worker about hospice, at the same time as we were tying to figure out other legal things since Mom also had refused to sign a DPOA while she was still lucid; I could never convince her that as long as she still wanted everything done for resuscitation, I would abide by her wishes. (She did finally say she did not wish to have CPR or be resuscitated when she went in the hospital that last admission.)
So, even though I was aware of services, I was in a rock and a hard place due to the legal issues. The skilled facility did consult hospice, and my mom informed me during one of my visits "that was a hard pill to swallow." But she did not decline the service at that point, since the staff did stress to her she would still receive her medications, nothing would be changing in her care, they wanted to support her in every way possible.
What was difficult for me was when I would read the EOB's from Medicare about what was done for her that Medicare refused to pay for. One example was having her toenails trimmed by a podiatrist that visited the facility. Reason for the decline in payment: "not a required end of life service." Apparently providing comfort for painful toenails isn't considered necessary. (I never did receive a bill however.)
The hospice staff provided support to me and to my mother's "boyfriend " (she used the term gentleman friend) for those last 4-1/2 months which was invaluable. The day my mother passed, her nurse at the skilled facility happened to be a nurse I had worked with many times over the years at the hospital; she worked float pool and I frequently got floated from my home units. She had taken care of Mother many times those last few months and it was rather a full circle moment. The hospice nurse had kept in touch, but also had another client declining the same day so she wasn't able to be present until after Mom passed. (Just the nature of timing.) Since my mom had not been active directly with a church, I asked the hospice chaplain if he could do her funeral service since he and George (our friend) had established a relationship. He could and he did.
All of this to say that it is a rocky road to navigate these decisions and ask for support, even for professionals. Our society has become so hyper focused on cure and fix that accepting the inevitable is seen as "giving up." Family dynamics often override professional knowledge.